Writing Beyond Our Illnesses

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A few months ago I wrote a piece for a non-profit organization about living with schizophrenia. In the piece, I said that I thought writing was an important therapeutic tool: writing can help you document your symptoms so you can easily share them with your doctor. Writing can also help you work through difficult times, difficult memories, and help you gain valuable insight into yourself and your diagnosis.

After writing about the benefits of a writing practice, I wrote that eventually, I think that to be healthy people need to stop writing solely about their illness. The editors asked me to take that part of the essay out, stating that their readers almost all use writing to document their illnesses, and they might take offense to my suggestion that one can and should move beyond that.

I’m not talking about never writing about schizophrenia again. I plan to write about it as ideas come to me, but I feel like writing other stories, stories about my grandmother, my siblings, my childhood, things that are happening in the world, all of these things can be a necessary progression to living a happier and more fulfilling life.

I think a lot about my writing and I am sure other people who write think a lot about their writing, too. If my thoughts are almost always swirling around about the symptoms of my illness, it is my belief that more and more of my life will be that illness. If on the other hand, I create a love story, write down memories from childhood, or of my grandparents, then I believe my life will become richer and fuller as those thoughts take over part of my day and part of my life.

As advocates for people with a mental illness we are often trying to show people that we are more than our illness; I know I say it, and write it all the time. I think we need to live that in our creative lives as well and I think our mental health will increase because of it.

I like to read about people’s experiences involving their mental illnesses, but I also like to read about the type of flowers they like, their dream car, and whatever other things they care for or love. I even like to read fictional stories that they created out of their imaginations. This type of writing does a tremendous amount to normalize those of us living with a psychiatric diagnosis, and it also means we are thinking outside of our illness, and I think that is a sign of health and can lead to an experience of more happiness.

Happiness is not rare, but it isn’t always easy.

 

 

 

 

Being A Rock and Needing A Rock: The Two Sides to my Mental Illness

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(If you have been reading my blog for a while, you know that I don’t feel sorry for myself. I frequently write about the beauty I find and see in life even though I battle with a severe mental illness. I don’t want people to think that my illness does not impact my life, though. It would not be accurate or truthful to say that living with schizophrenia is easy. For me, and many others, it is not. Yesterday I posted something that was 100% positive so I thought I would give a little glimpse into the struggles that some of us with schizophrenia go through as well. I am not complaining. This essay reveals another side to living with mental illness).

I’m not always sick or experiencing symptoms of my illness. There are hours, and when I am lucky, whole days, where my symptoms are not present and I am just an average woman going about my life. During these asymptomatic times, I simply don’t stand out.

Forty-one days ago my husband’s aunt was moved into hospice. We immediately drove to Los Angeles hoping to beat the march of death and tell her good-bye. We were able to be with her, and her immediate family for eleven hours in the hospital. I was able to share memories, comfort her daughters and enjoy the company of extended family during a difficult, sad, stressful and solemn time. I managed the whole day with calm, serenity, strength and grace. I was able to say good-bye to someone I cared about without worrying at all about schizophrenia.

A few days later, we went back to Los Angeles for my husband’s aunt’s funeral. When we walked into the chapel, anxiety overwhelmed me. I couldn’t sit still. I went downstairs to the bathroom. I walked back up and sat in a pew. I walked outside. I could not get comfortable. I told my husband I was struggling. After a half hour of him trying to help me overcome my symptoms, my husband said, “You need to take some more medication today.” I did so willingly because I knew that he was right.

My husband and I spent the ceremony in the car trying to relieve my symptoms. When it came time to move to the graveside for the burial, I tried to join the other people mourning. I walked downhill and stood near the casket. I couldn’t stay, though. After a few minutes, I made my way back to the car. I climbed into the back seat and tried to nap (usually a higher dose of my medication will put me to sleep for a while). Before I knew it, my husband was in the car, and we were on our way to having dinner with a large group of family and friends.

I thought sleeping would help and that my symptoms would be gone but they weren’t. I was hoping that some food would calm me down. At the restaurant, I ate as much as I could. I still felt shaky and anxious. My niece asked me to go shopping with her. We went shopping and stopped by Starbucks. By the time we returned, most people were saying their good-byes.

It wasn’t until we got in the car and started to drive home that my symptoms finally subsided. I said to my husband, who had been so helpful to me all day, “I am fine now.”

There are times when I can be the support that my loved ones need and there are times when I need their support to enable me to get through a day with schizophrenia. For me, the illness is unpredictable, and that means I have to accept my weaknesses when they are present and stand firm in my strength when I have a full supply.

The Secret to Writing

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For hours I read the descriptions for writing classes. I look at UCLA Extension classes. I look at Gotham Writing Workshop. I look at the offerings of the non-profit writing organization in my city. I spend hours searching for online writing classes and writing groups in my area. I attend as many writing workshops as I can afford. I am searching. I am looking for discipline. I am looking for a magic pill or bullet that will keep me in my chair every day writing essays, prose poems, blog posts, articles. There must be a trick to being productive. It doesn’t help that on Facebook I am friends with a wide network of writers. Those writers report their daily word count: 2500, 3000, sometimes more. I feel inadequate. I feel like a failure. I hire a writing coach.

I have to accept that I am looking for shortcuts. I am looking for a guru with the answers to being a writer, but no such guru exists. The only true guru would tell me this one word, “write.”  That’s it. I realize today as I am typing this that my problem is not that I need one more class, another critique, the input of one more teacher, assignments, encouragement, one more syllabus, or to participate in another workshop.

I need to sit down and do the work. I need to open a document and begin to type. I have been looking for something magical or mystical, some easy way out. There is no easy way out. It is just me, my thoughts, my hopes, my dreams, my words on a page that I either send into the world, or I don’t.

The time of reckoning is here: I either want to be a writer or I don’t. I either take this lonely step, or I give it up altogether. I think of all the money I have spent on advice. I think of all the time I have spent in classes. I think of how I was searching for someone to do the work for me. It doesn’t work that way. I need the determination. I need the motivation. I need to sit down and get down to business, the business of putting words on a page.

I have always believed that everyone has a book inside of them. I frequently meet people who tell me they are going to write theirs. I wish them well, I do, but this business of putting ideas on the page every day is not for everyone. It is both a pleasure and hard work. The words don’t always flow. The ideas don’t always make sense when you try to type them out. Not every piece is artistic or amazing.

I lost the ability to write for many years because I couldn’t focus while on my medication. I never want to lose that ability again. I don’t take this gift of time and the gift of desire for granted, but I have been looking for shortcuts and the path that has already been cleared for a few years now. It’s time to take out my machete, and start hacking away at the obstacles. No one can do it for me. I’m out in the jungle and the options are, move forward or stand still and perish without water.

I sat in my chair today, and I wrote. I wrote these words. I cleared the path a little bit. I took a step forward. Tomorrow, I hope I can make a little more progress, and after that, a few steps into the jungle each day.

It is work this writing, and although it is the best life I can imagine, I need to stop searching. If you want to write a book or make a living as a writer, you can pack your bags and begin to search for the best way to do that. But when you return home, you will find your computer waiting, and if you are lucky, there will be a sticky note on it that says that one word, “write.” And you will discover that you already had everything you needed before you left on your journey. That’s it. That’s all there is to it, “write.”

It’s so much harder than it sounds, you’ll break a sweat again and again, but that’s the secret, and it’s up to you to somehow find a way to turn it into magic one word at a time.

 

 

My Latest Essay on Drunken Boat

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I hope you will read my latest essay on Drunken Boat. It is about “Outsider Art.”  I think those of you who have any connection to mental illness will find the essay interesting. If you do read it, please let me know what you think of my opinion of “Outsider Art.”

Learning Not to Make Assumptions Especially Regarding Dis/ability

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When I had my job downtown, and I used to take the bus or walk to work, I regularly encountered my city’s growing population of homeless people. Many of the people I walked past asked me for money. I occasionally give money to homeless people, but I prefer to buy them a meal. With this preference in mind, I went grocery shopping and bought bread, peanut butter, and grape jelly. That night before going to bed, I made eight to ten peanut butter and jelly sandwiches. I carefully packed them all back into the bread sack and took the sack with me on my way to work the next day.

I offered a sandwich to every person I saw asking for money on the street. Not one person took the sandwich. (I ended up giving them away to my coworkers). I learned a few lessons that day that extends to other areas of life and people. The most import lesson was, don’t assume you know what other people want or need.

It is possible that every person I encountered that day had already had breakfast at one of the local shelters, or even at Starbucks or a convenience store. It is also possible that some of the people I offered sandwiches to had schizophrenia and like me don’t trust taking food from other people. It is possible that living on the streets as a vulnerable person, they have learned that not all people wish them well (we have had many beatings and even murders of homeless people in the last year). There are many reasons for not taking a sandwich from a stranger. I can’t possibly think of all of them, and it is possible that each person had a different reason.

Not assuming what other people want or need extends to all the people and relationships in our lives, but especially to those living with a dis/ability. People often think that they know what is best for someone with a dis/ability or what that person would want or need. These assumptions are where well-meaning people frequently give advice about nutritional supplements, exercise, spiritual practices, etc. believing that if the person with a dis/ability would just do something differently, their dis/ability may be more manageable or may be “cured.” This advice, unless asked for, is mostly unwanted, belittling and at times degrading and damaging.

I don’t believe that any nutritional supplement or any diet, vegan or otherwise will clear up my schizophrenia. I also don’t believe that God is somehow punishing me, and if I just prayed more, or prayed the right way or put the Bible on my head and did a jig that God would heal me. I most certainly don’t think demons possess me.

If someone asks for your advice about diet, exercise, spirituality then that person is open to suggestions and ideas about those things. If someone doesn’t ask, it is possible they are already getting the best treatment available to them, and those types of comments will come as an insult even though they were not intended that way.

When someone says, “If you went completely vegan and gluten free, your symptoms would clear up,” those of us with a dis/ability hear, “You don’t know your illness. You don’t know your body. Your doctors (even if they have been working with you for years) don’t know as much as I do. You aren’t doing everything you can to be “well.””

When you have an illness and are open about it, people will say all kinds of well-meaning things that don’t land on our ears or heart or mind in well-meaning ways. The most harmful thing that people say to me and someone says it every few months is “You don’t have a mental illness. You are full of demons.” What I hear when someone says that is, “God doesn’t love you.”

Saying a person with schizophrenia has demons is particularly cruel because we frequently experience delusions and hallucinations that have to do with God or religion. After those episodes are over, if we still want to practice our faith, we have to figure out by ourselves how to get back to a sort of mainstream Christian belief system (or whatever religion that person practices – I am Christian and have only heard this from Christians). If schizophrenia was caused by demons and not an illness why wouldn’t more people struggle with it, and as I always ask, why would medication be able to chase demons away?  Are demons opposed to living in someone who takes anti-psychotics?

I don’t assume I know what life is like in a wheelchair. I don’t assume I know what life is like with MS. I need to ask people who have a dis/ability that is different than mine questions and not hit them with answers. Hitting someone with a dis/ability with an answer before you know their circumstances, symptoms, struggles, is giving them one more thing to feel misunderstood, isolated, angry, or other negative thoughts and/or emotions.

My life is good, and so are many other people’s with dis/abilities, but like everyone else, we don’t need one more thing to drag us down. I try not to be a weight to others, let’s all try it together and maybe all of our struggles will seem lighter as we enlighten each other about the thing we know best – ourselves.

My First Literary Essay (not about schizophrenia)

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If you have been following me for a while you will know that I have been trying to break out of mental health writing. Don’t get me wrong, I love mental health writing and all the positive things it can do by educating, raising awareness and saving lives. I love that stuff, but I have always wanted to be a writer. Just that, a writer. Not a woman with schizophrenia that writes.  Please read my latest essay on Angels Flight literary west. It is about death, David Bowie, and how we mourn our losses.  The title is The Extraordinary Ordinary Death.    I hope you will read it and share it.  It looks like I have made it to the title of, writer. I also have schizophrenia and will always write about that, but today, I am celebrating being an artist among other artists – disability or not.

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